Alopecia World
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Xeljanz Users...Let's Stay Connected Here in 2016!
Hi Friends--
I want to thank so many for following my discussion link, "My Stanford trial experience, Part 2 (Xeljanz)" throughout the bulk of 2015. I began participation in the trial in late January, got my first RX for Xeljanz in February, and started to see the first signs of regrowth 3 1/2 months in. After the trial ended, I opted to stay on the drug, and now I am a post-trial patient for the doctors at Stanford. I will continue to fly up there from Los Angeles once every 3 months or so to provide them more data with the hope that maybe the FDA will one day approve Xeljanz for alopecia! As long as my bloodwork remains healthy, I anticipate staying on the drug for the forseeable future. I have had no negative side effects on Xeljanz since I started. If anything, it has calmed down my overactive immune system and possibly helped settle some food sensitivities I had been developing last year.
I am starting this discussion because I really hope those of us who are currently on Xeljanz (or are about to begin) will want to keep tabs on each other. I have read some posts on other links where patients stopped or reduced the drug, and their hair began to quickly fall out. However, I DO know that alopecia can go into remission. It did for me from early 2009 until the end of 2012. Four years of spontaneous remission! With no drugs. I hold onto hope that Xeljanz may help push some of us into remission, allowing us to taper back on the dosage for some time without devastating relapse. Maybe that's not in the cards. In any case, we are the lab rats right now! So, we need to look after each other and share our stories--whether they are good or bad. My attached photo shows me a week ago--12/15/15. I will continue to post more photos as time goes by. Please all do the same. Let's band together in 2016 and get some viable treatments approved for this cruel disorder!
XO
Susan
I want to thank so many for following my discussion link, "My Stanford trial experience, Part 2 (Xeljanz)" throughout the bulk of 2015. I began participation in the trial in late January, got my first RX for Xeljanz in February, and started to see the first signs of regrowth 3 1/2 months in. After the trial ended, I opted to stay on the drug, and now I am a post-trial patient for the doctors at Stanford. I will continue to fly up there from Los Angeles once every 3 months or so to provide them more data with the hope that maybe the FDA will one day approve Xeljanz for alopecia! As long as my bloodwork remains healthy, I anticipate staying on the drug for the forseeable future. I have had no negative side effects on Xeljanz since I started. If anything, it has calmed down my overactive immune system and possibly helped settle some food sensitivities I had been developing last year.
I am starting this discussion because I really hope those of us who are currently on Xeljanz (or are about to begin) will want to keep tabs on each other. I have read some posts on other links where patients stopped or reduced the drug, and their hair began to quickly fall out. However, I DO know that alopecia can go into remission. It did for me from early 2009 until the end of 2012. Four years of spontaneous remission! With no drugs. I hold onto hope that Xeljanz may help push some of us into remission, allowing us to taper back on the dosage for some time without devastating relapse. Maybe that's not in the cards. In any case, we are the lab rats right now! So, we need to look after each other and share our stories--whether they are good or bad. My attached photo shows me a week ago--12/15/15. I will continue to post more photos as time goes by. Please all do the same. Let's band together in 2016 and get some viable treatments approved for this cruel disorder!
XO
Susan
Replies to This Discussion
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Permalink Reply by Xeljanzmiracle on
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My top ones have been back for awhile. Some of them came in blonde at first and at that porcupine angle. But my bottom lashes are just starting. The only place I don't have regrowth is under my arms too. And that's fine with me. I don't care if my underarm hair never grows back, lol!
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Permalink Reply by singh on
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Hey Susan thanks for the great update you look good! I've been on it a total of 12 weeks but only got tiny white hairs on my head and a few back and white hairs on my face and some hair nose. So am not sure if am a non responder or a slow responder..I hope my Dr might prescribe something to give it a boost but will see. Am just giving my update. Hope everyone is good
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Hey Singh, good to hear from you! If you were a non-responder you wouldn't have one hair back yet. When did you make it to New York and restart your Xeljanz? You would have a lot more hair but you stopped taking it for for awhile.
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Hi xeljanz miracle just seen your growth looking good. And that's true Cz it was a break mybe that's why but a lil
Growth yeh so I can wait and see but mybe a boost with something might help. I got back this month with xeljanz
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Thank you. Did you make it to New York? How was your trip? Were you able to get 4 bottles using the co-pay card?
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Yes I did and I bought a extra one Cz it saves me the trip. I heard it's getting reviewed in Europe so it Might get approved hopefully.
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Great! I'm glad you were able to get an extra one. Did your sister go with you?
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Permalink Reply by Susan McAdams on
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Hey there Singh--
I didn't see any growth anywhere until 3 1/2 months in. So that's around 14 weeks on 2 pills per day. Then, it just started and kept on growing everywhere. I think the first signs were some pale hairs in my brows, and then I noticed dark shadows appearing in patches on my scalp. By the 4th month, it was evident things were progressing. So don't despair. It sometimes takes longer. But I hope that since you are starting to see early activity, you're in the early stages and will soon be on your way!
Fingers crossed!
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Aww thank you Susan! Yes I went on it for 8 weeks then stopped for 8 weeks and now back on it. I have noticed I hairs that I have not had before but am just not sure if it's the xeljanz or just a cycle. But it's very encouraging and I will look out for any of them signs so fingers crossed.
Will keep you's updated.
Singh.
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Susan, thanks for the awesome post. Your hair looks beautiful. I have a hair appointment next month to get mine colored. I hope it turns out as nice as yours. I am also getting used to the short look after having long hair my whole life. I am still on 3 pills a day and would like to cut back to 2, but am too afraid to try it.
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Susan you look great. Gives me a lot of hope. Thanks to Return_Life i have a meeting with a Canadian dermatologist and will hopefully be in Xeljanz soon!
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I'm glad Return Life was able to help you. Keep us posted on ADML's discussion Wienchee. Thanks! My pictures below that I forgot to upload earlier from first regrowth last September to now:
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IMG_20151210_102857~2.jpg, 1.5 MB
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